LSN Trustees are delighted to announce that the world renowned a cappella ensemble, the King's Singers, have generously offered to support the work of the LSN and help to raise the profile of lymphoedema, by performing a charity concert in St Luke's Church, Chelsea, on the evening of Wednesday 13 June 2007.

Two important publications were launched at the annual conference of the British Lymphology Society (BLS) in October 2006. Both documents are primarily concerned with promoting awareness of lymphoedema and developing best practice in its management. These two publications are the Journal of Lymphoedema (JOL) and Best Practice for the Management of Lymphoedema: International Consensus.

The Journal of Lymphoedema
The Journal of Lymphoedema (JOL) is a new peer-reviewed international journal which will be published quarterly. It is an exciting and significant addition to the published resources available to all healthcare professionals with an interest in the management of lymphoedema. The JOL is the result of a partnership between the journal and the Lymphoedema Framework Project (LFP) and its aim is to develop the clinical practice of all professionals involved in this area of care. The journal will publish topical, relevant and innovative articles in the categories of research and audit, review, international viewpoints, education, practice development, service development, diagnosis and debate.

The Editorial Board of the JOL consists of leading figures in lymphoedema from around the world, all sharing a passion in the area and a drive to ensure the effective development of clinical practice. The journal is involved in developing strong links with relevant organizations globally, and works closely with the British Lymphology Society and the Lymphoedema Support Network. Each of these vitally important organizations is represented on the Editorial Board by the current Chair.

Best Practice for the Management of Lymphoedema
The development of this document has been driven by the Lymphoedema Framework Project (LFP) and aims to raise the profile of the condition and improve the care that people with lymphoedema receive by defining and describing best practice in a practical and accessible way. Most importantly, the best practice document is the product of a partnership approach and a rigorous process of consensus. The principle of active partnership is a key feature of the LFP and has been essential to enable the many different stakeholder groups, both national and international, to be represented in achieving consensus about a range of key issues relating to the management of lymphoedema.

The partnership is led by the Centre for Research and Implementation of Clinical Practice (CRICP) at Thames Valley University, London and includes the Lymphoedema Support Network (LSN), the British Lymphology Society (BLS), participating Primary Care Trusts (PCTs) and the Wound Care and Compression Garment Industry. In addition, endorsement of the document and its contents by key national lymphoedema organizations from around the world, as well as an advisory board comprising members from Australia, Canada, Europe, India, Japan, the USA and the United Kingdom, has provided an invaluable international perspective.

A consensus approach
We know that there is a lack of traditional scientific evidence, in the form of randomized controlled trials, to support much of what is done in key areas of lymphoedema management. In other areas of health care where this is the case, it is generally recommended that ways are found to develop guidance for practice that make use of alternative sources of evidence, such as expert opinion and consensus.

The consensus approach used for the initial development of the best practice document was based on the Health Technology Assessment (HTA) model. This is a rigorous process that uses a number of different methods to gather opinion and promote discussion from as wide a range of contributors as possible. The aim was to achieve a balance between the research evidence that does exist and the collective knowledge and expertise of those contributing. The methodology adopted in the development of the best practice document included a number of repeated stages culminating in an electronic appraisal in which all items for inclusion in the document were rated by a web-based system using a four point Likert scale. By using this scale, a contributor could record that they strongly agreed, agreed, disagreed or strongly disagreed with each proposed item. To achieve inclusion in the best practice document at least a 95% level of agreement was required for any one item.

The final stage of the consensus process was the review of the document as a whole by an international advisory board of lymphoedema experts. This was a vitally important element because the international perspective has not only extended the document's scope and relevance but it has also enriched its content.

A practical document to benefit patients
The content of the document is designed to be relevant for all practitioners, be they specialists or generalists, who are involved in the care and management of people with lymphoedema of all causes. It is a document that is aspirational rather than prescriptive. It sets a standard which all involved in lymphoedema care and management should strive to achieve, both in terms of individual professional practice as well as in service delivery.

The document covers key areas of management such as the identification of the patient at risk, assessment and treatment decisions. Particular areas of management are also dealt with including, skin care and the management of cellulitis, lymphatic massage, lymphoedema bandaging, the use of compression garments, exercise and movement, psychosocial care, palliative care and surgery. There is also a section on 'other treatments' that includes drug treatments, breathing exercises, lymphoedema taping, hyperbaric oxygen and laser therapy. The text in each section is supported with photographs, simple diagrams, algorithms and flow charts. It is a document designed to be useful on a day to day basis to all involved in the care of people with lymphoedema.

It was announced in the spring issue of LymphLine that from March 1st 2006 lymphoedema compression garments would be available on the Drug Tariff. The inclusion of these products in the Drug Tariff represents a significant change in policy and is the culmination of an extraordinary level of collaboration between patients, practitioners and industry. This brief article provides an account of why this change was necessary and how it has come about.

Background
Work by the Lymphoedema Framework Project (LFP) has highlighted that there are many people with lymphoedema living in the community receiving little or no treatment.We also know that many hospital/hospice based specialist services are overwhelmed. This is because many patients, who, on clinical grounds could be receiving long term management of their lymphoedema in the community, are not doing so because of a lack of an appropriate infrastructure at PCT level. A principal aim of the LFP has been to address these issues by developing specialist led, primary care-based lymphoedema services that will ensure early recognition, effective treatment and long-term management of people with lymphoedema of all causes.

One of the most significant barriers to making primary care based lymphoedema services a reality has been a lack of access to compression garments in the community. This situation was made more difficult by the limited availability of compression garments designed specifically for lymphoedema. In response to these two fundamental issues the most strategically important focus of the LFP over the past four years has been to ensure equitable access to appropriately designed lymphoedema garments in the community. A vital part of this strategy has been to secure their inclusion in the drug tariff.

The drug tariff
The drug tariff is an official government document which is published monthly by the Department of Health (DoH). Its purpose is to set out what drugs and appliances (including compression garments, bandages, etc) the DoH has agreed to fund and how much it will pay to the suppliers of these products (reimbursement). Inclusion of a product in the Drug Tariff means that the product will be available to patients on prescription.

Achieving inclusion in the drug tariff
Achieving the inclusion of lymphoedema compression garments in the Drug Tariff has been complex and challenging. The process started with reaching consensus between patients, practitioners and industry about how best to manage the use of compression garments in lymphoedema. It was through the consensus approach that a classification for compression garments based on European standards of compression was agreed. The outcome of this work is included in the Best Practice Document and has led to the wound care and compression industry developing a new range of high quality products specifically for lymphoedema.

The next step was to prepare a case for inclusion and this was developed from a series of meetings between the LFP, industry and a consultant advisor (with Drug Tariff experience). The prepared case argued that the current lack of provision of appropriate compression garments for lymphoedema promoted inequalities of care especially with regard to the prevention of complications and the promotion of self-management. Based on this case and the guidance provided in the Best Practice Document the Drug Tariff accepted in principle that lymphoedema compression garments should be included as a separate category based on European standards of compression. In response to this acceptance in principle and with guidance provided by the Drug Tariff, individual industry partners then prepared their submissions for the inclusion of their own products in the Drug Tariff. An important factor in this process was the increased awareness of lymphoedema at government departmental level due in no small measure to the work of the Lymphoedema Support Network.

Guidance on prescribing compression garments
Although complex cases of lymphoedema with limb distortion will continue to require specialist assessment and management, including the prescribing of appropriate compression garments, general practitioners will have a role in prescribing compression garments for patients in their care in the community. This raises a number of issues regarding education and training and the need to establish clarity about limits of competence. Detailed guidance is currently available in the Best Practice Document and in the Lymphoedema Framework Template for Practice on compression hosiery. However, more specific and consolidated guidance that builds on the available information and which is presented in a portable, easily usable format is generally acknowledged to be required.

The LFP, in partnership with the Lymphoedema Support Network (LSN) and the British Lymphology Society (BLS), and supported by Sigvaris, convened an expert panel to begin working through these important issues. Invited experts, nominated by each of the partner organisations, and representing patients, specialist practitioners, medical specialists, community nurses, pharmacists and researchers have met on two occasions so far. A third stage is being planned following which a set of definitive guidelines for prescribing compression garments will be published.

Following much hard work and determination in working towards this aim, the LSN Trustees are delighted to announce the appointment of a new full-time Fundraising and Development Manager.

This appointment has been made possible by the £100,000 award received from the Big Lottery Fund in Autumn 2004. However, this funding was conditional on the LSN obtaining the remaining £88,000 that was needed to finance the full cost of its major 3 year development plan. Sadly, all subsequent funding applications submitted to various fund holding trusts over the past year were turned down. Undaunted, using generous donations from various sources including those from our members and the very helpful addition of gift aid, the LSN has secured the first year's funding and has finally achieved its goal.

Karen Friett joined the LSN team in May, bringing with her a nursing background and an awareness of the problems faced by lymphoedema patients, together with the fundraising and managerial skills required for this post. Karen will work alongside the existing structure of the LSN, together with the Trustees, in the development of current activities and initiating new projects as outlined in the development plan submitted in the Big Lottery Fund application.

The LSN's development plan includes: increasing activity to highlight the lack of service provision for lymphoedema patients in the UK by targeting Primary Care Trusts (PCTs); instigating more media opportunities to raise awareness of the condition and the services the LSN can offer, thereby, reaching more patients - diagnosed and undiagnosed; providing more information, both in print and DVDs and also translating resource materials for minority and ethnic groups; prevention information for patients at risk of developing lymphoedema is also high on the LSN agenda.

Organising a fundraising event can be great fun and will help to raise awareness of lymphoedema, as well as raising money for the LSN.

Fundraising events can range from a simple coffee morning or ladies lunch… to a more adventurous Charity Ball… as reported in the Spring issue of LymphLine. The money raised will be put to very good use in providing support and information for lymphoedema patients. The new LSN fundraising pack provides plenty of ideas to get you started and hints on how to plan your event.